Being a caregiver to a loved one during a long-term illness was a life-changing, difficult, yet very meaningful experience. Turns out caregiving brings its own set of challenges while your person is also having life-changing, difficult and hopefully meaningful experiences.
As a caregiver you take on several new roles, as well as the ones you already had. Just a few are:
Medical interpreter and researcher
All these, and a few more, on top of what I was already doing to maintain the finances, my kids, household duties, my church obligations, friendships, etc. (I’m exhausted just writing all that let alone remembering it! GAH!). I think one of the hardest parts for me, well both of us really, was having to navigate the role change, from someone that relied on my person for so much, to having to be relied on so much. I mean, I was relied on before, but not like this – for EVERYTHING. I weirdly went into terminator/mama bear/I-will-cut-you-if-you-come-near-him mode. (Even more weird, he was content to let me!) NO ONE was going to be there for him but me. If I thought anyone would stress him out (and by extension, me), make him sad, be any kind of barrier to his healing for any reason, they were deemed toxic and were to be avoided and shunned. If you weren’t outright turned away, I had you (I’m not joking) on a 20 min timer. When that bell rang, I stood up and let you know you had about 30 seconds to hit the road. It didn’t last long before I was “caregiving” so hard, we were all miserable. I was depressive, irritable, and just, over it. That was by week 3. He hadn’t even started full on chemo yet. Fortunately, there were REALLY good nurses and a REALLY good social worker at the oncology chemo suite (if you find yourself here – PLEASE utilize these fine professionals!).
Here are a few things I learned from them and other caregiver friends that made caregiving - give to both of us.
Be present. Worry, projecting, fear, etc. is not going to change or help anything. Damn it! It’s so much easier to be in that space. Instead, listen to your person. Whenever possible, let them talk about THEIR fears, hopes, stomach aches, food cravings, grief, football scores – whatever. Look in their eyes and be WITH them. Now is all that matters.
Take a break from the disease. You think you’re over it? Pretty sure they’d rather think about ANYTHING else. I know there’s a ton to research and understand, and the more prepared you are, the less afraid you feel. However, it’s ok to step back for a second. It’s not going anywhere. Take an hour a day and watch TV. Play cards. Watch funny YouTube vids. Gossip about your goofy neighbors. Turn off your phones and treat that time as sacred as church. It IS church.
Let others hang out with your person while you go somewhere (with or without someone else). If you know me, you know that connection is my JAM. I generally have no problem letting people in. I love helping people, I love letting people help me. I love that whole interaction. This time was different. It was SOOO hard. I was super jealous of the time, since I believed (well, in our case, knew) it was limited. I was afraid that if something happened, that it wouldn’t be me to be there. Here’s the thing. With all due respect, your person needs another face to look at besides yours and the medical teams’. It’s ok if you limit the time, since treatments cause fatigue and occasionally immunity issues, but let others have some of it. Connection with friends, family, co-workers, etc. is as healing as any treatment. Even if folks come around while you are at home, don’t be too quick to cut if off if you think it’s wearing them out. Your person will let you know when enough is enough.
Let others help with some of the hats. Oooh, this is hard too. We LOOOVE being (or pretending to be) so strong and doing it all ourselves. “She’s so strong! I don’t know how she does it!” “I could never do what he does taking care of his wife with such grace and kindness all alone!” Admit it. It’s awesome to hear. Well, stop it. Your ego isn’t as important as real caretaking, which is focusing on your person and letting someone else help with the laundry. If you don’t have a team yet, this is how you build one. A community doesn’t become a legit community until they are serving together. If your family is the catalyst, so be it. You’ll be a part of theirs next. Here’s where people put up or shut up. “Oh honey, please let me know what I can do to help.:” “You bet! Here's my grocery list and my Venmo.”
Accept the bad days and limitations. Being sick sucks. Taking care of someone sick sucks. Some days just suck. You’re not going to do everything right. Once in a while, you’re going to say and hear unkind things from each other. No one means it. Try not to take it personally. Dave was supposed to have, like, 3500-5000 calories a day at one point. He once yelled at me because I was putting low-fat milk in a cream soup. Or he’d get frustrated that we’d be late for an appointment, after I’d been cleaning up barf. I told him (loudly) to “stop being a cancer diva!” HAHAHA. It’s funny now. Don’t feel guilty. It’s part of the deal. Apologize and try again tomorrow…or the next day.
Keep your health a priority too. If you find that it’s too hard to take a walk, or spend time with a book, or talk on the phone with a friend or anything else that fills you up, that’s a good indicator you need to bring on a team member. You really do have to take care of yourself, or your kind of useless to your person. They will be worrying about you instead of putting their energy into healing. There’s only so long you can fake it. Keep your doctor’s appointments up as well. In fact, the second there’s a diagnosis for them, get a physical yourself, just so you know where you are physically. This is an excellent time for therapy and possibly mental health meds. The better shape you are in, the better caretaker you can be.
Let your person know they are still your person. Of course, grieve what once was, but also discover what is and what can be. Find new ways to be important to EACH OTHER. Take the time to see how this new role is refining you and teaching you about love. Tell your person about it. Remind them that they are more and have always been more than the things they were and let them do the same for you. If things are hard to express, write it down and let them read it. You both need to know that you are more than these roles and what they represent on the outside. No one is superior or inferior in this situation. No one is stronger or weaker, suffering more or less. You both are growing in different ways for different reasons but growing for sure. It’s really healing if you both take a moment to acknowledge it to the other.
Corey and Katie entered widowhood in 2016 after losing spouses to cancer. They met and connected in a widow/widower support group and later married. One of the principles they learned from their own experiences and those of other surviving spouses is that the more prepared a surviving spouse is on a financial, legal, emotional, and practical level, the better they will adjust to widowhood. They will maintain their independence and control of their assets and be freer to properly grieve and move forward in life. Conversely, those who are not prepared are more likely to have their lives flipped upside down. They may need to move and uproot kids because they can't afford the mortgage, rely on family or other charities to financially support them, and/or change jobs to allow them to better serve as a single parent. We hope to share what we've learned and help other families properly get their affairs in order and be prepared with confidence, peace of mind, and in control of their assets.